The Guardian’s July 5th editorial on gene editing was a rare win for skeptics. It finally acknowledged the darkness lurking beneath the medical promise. Welcome.
But here’s the thing. Too many scientists treat germline editing as a train leaving the station without passengers. They say eradicating hereditary traits is inevitable. That arrogance shuts down the conversation.
Look at the data. Progress Educational Trust polled the UK public. They found clear support for editing genes to stop life-threatening diseases. That makes sense. Save a life. Yes.
Now look at deafness.
A majority of the public does not want to edit it away. It’s not killing anyone. Yet the momentum ignores this consensus.
The FDA in the US gave the green light in April for gene therapy targeting deafness. They pat themselves on the back for acting “swiftly.”
Swift for who?
The research landed in the New England Journal of Medicine—a place no deaf signer can read in sign language. The discussion happened behind closed doors in medical journals. Deaf communities were excluded by default. Not because they didn’t ask to be there, but because the door was never opened to them.
We know the risks. Decisions about our bodies, our identity, are being made by people who don’t use sign. This isn’t theoretical. It’s happening.
Nothing about us without us. It’s an old refrain but it cuts deep right now.
UK policymakers need to hear this. Don’t just talk about gene editing. Talk to the people affected. Include sign language access from the start, not as an afterthought.
Why would anyone decide a community should disappear without letting them have the final word?
The door is closing fast. We need to keep it open.
